Felling so alone . . .

PositivePeg · 01-08-2016, 07:09 PM

Hi! I'm a newbie. My official diagnosis was on Dec.4: stage 2, estrogen +, Her2+. I'm scheduled for a mastectomy with reconstruction on Jan. 14. Even tho' that stinks, I'm blessed with wonderful, loving support of my husband, daughters & friends.
So, how can it be, that I feel alone? My self-consciousness keeps telling me that people only think of cancer when they see me. I've been open & willing to explain my situation to others, but gosh darn it, I hate it when someone refers to my upcoming 6 hour surgery as a 'procedure'! I let others take the lead & I answer questions, but I'm not sure how much info is too much. And, why do I feel the need to reassure others that I'll be ok?!
Yes, this is a vent & I figure the people who read this will understand. I haven't cried for a week, but I feel like I need a good cry! My faith is strong. My body has been through different types of trauma twice before & Jesus has been with me every step of the way. So, how can I feel like I'm alone? I'm rambling, sorry.
Peg
I need to do a signature. In the meantime, I'm 61 yrs old & live near Columbus, OH. BTW, I chose my user name a week ago! Not feleling it this evening!

MaineRottweilers · 01-09-2016, 05:24 AM

Good morning, Peg.

Having cancer (or any illness) can be very lonely even when you are surrounded by caring, supportive people. You've been betrayed by your closest and most divine avenue, your very own body. If you cannot trust yourself, who can you trust? That is a very lonely thought. I am amazed at your strength, you have not yet cried. Let it go, it may be cathartic. I am so glad your faith is strong, it will help to carry you through your loneliness.

As far as needing to reassure others that you will be OK, that only goes as far as you allow it. You don't need to reassure anyone of anything, you do not need to share explicit details of your treatment, if it makes you uncomfortable. The only obligation you have is to your immediate support system and that is to let them know that you will do your best for yourself for as long as you can. This journey is about you, between you, your body and your faith. You can choose to share (or not) with whomever, as much or as little of it as you are comfortable with.

The reason you feel alone right now is because you are in conflict with your body and faith, feeling a bit betrayed by the two things that make us, US. As you begin to come to terms with what is happening to you and try to find a place of balance, if not comfort with your new circumstance, you will regain your confidence and feel much less lonely.

We've all been exactly where you are but it doesn't make it any less lonely for you. You can only look at us as we move forward and see that it is possible to move forward, live, love, enjoy, rejuvenate, heal and rejoice. It just takes time. It's a process much like grieving.

God Bless,

LizzElliot · 01-09-2016, 08:17 AM

Tracy, that is a beautiful, nearly divine answer. Bless you for being who you are and so in touch to write something so true and so meaningful. xo.

Carol Ann · 01-10-2016, 10:55 AM

Please take the pressure off yourself to reassure everyone if it becomes tiring. You need all your energy to take of yourself right now. If anyone has a "job" in all of this, the people who surround you are there to support you, not the other way around.

Carol Ann

agness · 01-10-2016, 11:08 AM

I wouldn't do surgery first if I were you. I know this is throwing a kink in the works but they are going to have you on chemo anyway and having surgery first will eliminate the one chance you have to see if your therapy is working.

It sucked going right into chemo but when I finally had surgery it had completely dissolved my tumor in my breast and axilla. I was able to get away with less surgery -- which was my preference anyway. I had such bad locally advanced disease and yet I wanted to try to help my body heal as much as possible.

The fact that you are HER2+ at all and are being offered surgery first shows me that your surgeon is behind in their practice and you are being offered "standard of care" for any breast cancer type.

MD Anderson has been saying this for years. I think you need a new doctor or at least a new protocol.

Carol Ann · 01-10-2016, 11:37 AM

Second what Agness just said. My case was different because none of my tests revealed anything, so I never had the option of which to have first, but Agness is correct that chemo first is now considered the better way to proceed ... please get a second opinion!!

Carol Ann

jacqueline1102 · 01-10-2016, 12:10 PM

Greetings Peg,

I second what the others have been saying; the standard of care these days is to administer chemo first so as to shrink the tumor load and see how well you respond to the chemo. Then surgery and then radiation. I would advise seeking a second opinion as well and having someone in your family go with you to that appointment to take lots of notes.

As far as reassuring others, please use that emotional energy towards yourself. I hear all too often as a provider as well as myself, being a patient, that the patient diagnosed with the cancer spends an exorbiante amount of energy on how others are coping. And yet somehow, others do not know how to respond to the cancer patient; yet so willing to accept the reasssurance from the patient who is suffering. We also know that coping becomes particularly challenging when the patient has had previous traumas. The body then becomes activated and we are on high alert, watching for the next hit so to speak. Please take care of yourself during this time line of treatment (and after). And talking with someone as in other patients or a provider who "gets it" about cancer treatment not just a provider (psychotherapist) who is a generalist.

Hope this all makes sense. Peace to you,

Jackie

agness · 01-10-2016, 12:27 PM

I should add that I had arranged to take three months off work and had surgery scheduled for an abdominal fibroid surgery, everyone knew about it. I cancelled the surgery on s Monday of the week I was to have surgery, even though it would help me with my infertility, even though it could help me get pregnant, even though my own mother got mad at me. I hadn't been able to sleep for days and I finally realized it was the surgeon and not me, that she wasn't right for me.

I did have the fibroid surgery a year later and with a much better, all woman, surgical team. It was an amazing experience in my life - even as sucky as having surgery can be. I have two kids now, conceived with TCM and not ART to boot.

You are paying someone to cut you. We have already been establishing in our separate thread that HER2 gets mishandled and you, as the customer, get to decide.

But yeah, your doc is wrong.

PositivePeg · 01-10-2016, 12:43 PM

Hello everyone!
Thank you so much for your responses - esp about trying to reassure others. Traci - you're right about feeling betrayed by my body. I survived injuries from a motorcycle accident in 2013, then I had my entire spine rotated & fused (aggressive scoliosis) in 2014. The recovery is 2 years & my breast cancer diagnosis came at the 13.5 month mark! Jackie, at this point I may always be waiting for the next 'hit'.

As far as having surgery first, protocol used to be chemo first for 2 reasons: insurance wouldn't cover the type of chemo needed for Her2 unless it was done first AND because, as mentioned, tumors would shrink during chemo, with the possibility of having a lumpectomy instead of a mastectomy. I have 5 tumors in my right breast. Shrinkage won't help me avoid a mastectomy - they're all spread out. My surgeon & oncologist have agreed to surgery first, so they'll have the exact pathology report of ALL the tumors to determine the best chemo treatment. I have a great deal of confidence in my surgeon and the team she has put together for me. She's very picky - even about who reads test results.
Thank you for several responses with input about which should come first, but this plan makes the most sense to me - in my case. I want the tumors out, NOW.

My emotions have been all over the place. I went to my granddaughter's 5th birthday party & it seemed like I was 'outside' of myself - observing the party. Too weird!
I 'think' I spelled things right today!,

PositivePeg · 01-10-2016, 12:45 PM

Tracy, I'll be re-reading your message many times - thanks, again!

agness · 01-10-2016, 02:29 PM

That's great that you are feeling ready for surgery. Yes, you probably can't avoid a mastectomy based on the current standard of care, but if you do TCHP you have a 50/50 chance of it working.

I did want to correct your statement about chemo being the older standard of care, just in case anyone else reads this and gets confused. It is unlikely that with early stage disease and a hell of a lot of patient pushiness that any tumor tissue will be tested for mutations beyond what is normally offered to any breast cancer patient today.

From my stage 4 sisters I have learned about live tissue testing through organizations such as the Weisenthal Cancer group -- where they take live tumor and test to see what chemo it responds to best:
http://weisenthalcancer.com

Foundation One testing is another common one, done to sequence preserved tumor tissue in order to test for certain mutations that are common to cancer.
http://foundationone.com/

Other labs do different tests as well including tumor antigen testing, a cornerstone of the developing immunotherapy field:
https://en.m.wikipedia.org/wiki/Tumor_antigen

Unless you are very wealthy or influential, I highly doubt you are being offered better than standard of care. The only difference being that you lose out on the opportunity to know that neoadjuvant treatment was effective.

PositivePeg · 01-10-2016, 06:32 PM

Agnes, As a newbie, I accept your correction. I should clarify that in my individual case, the tumor board decided surgery first would be the best option for me. If I'm understanding your response, there are many different types of tissue testing and these aren't offered to everyone - therefore it doesn't affect the type of chemo a be patient receives. Is that what you're saying? I'm confused. I'll read the articles you sited - thank you. No, I'm not wealthy - darn!
Peg

agness · 01-10-2016, 09:51 PM

My tumor board decided that I have a few months to live last week. They also ignored my disease progression even as I pointed out that I wanted to do more. I don't trust tumor boards much any more. Mine was sending me to palliative care. I fired them and got a new team.

What do you want? Don't approach this with fear. With HER2 how soon will they start treating the mutation? Are you going to wait 6 or 8 weeks with HER2 disease spreading through your body? It's a greater risk to wait on chemo than to wait on surgery. Debulking the disease is nice but it is merely about staging you and that is of zero therapeutic value to you if chemo can get rid of it. Do what is best for your body and not what is most comfortable for your surgeon. Ask again why they believe that cutting into active tumor and delaying chemo will result in a better outcome and ask them to show you the studies that back them up.

I posted this a few works ago on the breastcancer.org site, maybe it will help you

20 Questions for Your Oncologist, and word from the wise
https://community.breastcancer.org/f.../topics/838726

I don't mean to challenge you but rather to challenge to care you are being offered. I'm sorry your body has disease, that you are here. I hope treatment gets you NED and you are able to put this behind you in time.

Kkmom · 01-11-2016, 06:14 PM

Peg,
First of all no need to feel so lonely. We are all right here, just a keystroke away. As I was reading your post, I noticed your diagnosis was the same as mine when I had BC - estrogen/progesterone + with the her2neu. My mass was 1.9 cm and I had a lumpectomy. Is there a reason you are choosing a mastectomy or was it recommended?
After reading your post, I scrolled down and read the replies - when I got to the reply from Agness. I thought exactly what she wrote about having the treatment first, then determine what procedure is needed.
I highly recommend a 2nd opinion. I got a 2nd opinion when I had BC and I am so glad I did. You have to advocate for yourself when dealing with BC, ask questions and understand why and what procedures they are doing.
We are all here to help you - don't hesitate to ask. We have all been where you are right now.
Keep us posted

Pam

Kkmom · 01-11-2016, 06:21 PM

Peg,
After reading the rest of your post, I understand why you are having a mastecomy first and treatment second. But know we are here for you and supporting you.

Pam

Jedrik · 01-11-2016, 09:07 PM

Hi Peg,
I've got multicentric cancer in my breast, too. The two bigger knots where biopsied, both were Her2 positive. So, like you I'm scheduled for a mastectomie. But I do chemo first.
Here I am definitely chiming in with @agness: Her2-cancer cells are very motil, which means they get far early. So, to me too, the obvious solution is to hit them with all you've got as fast as you can.
For me this meant: Diagnosed by gyn on 17th septeber 2015 "This can't be good". Mammogramm on 21st, biopsy on 22nd, results 24th. Then multiple scans for staging. Commenced chemo on 19th october - just a month after gyn's first glimpse at the problem.
Now I can see those tumors shrink. so I know this treatment is right for me. Great feeling, very reassuring. Even if that breast still has to go, I'm next to sure, that all the margins will be clear or have mostly dead cancer cells and scaring which ups the prognosis quite a bit.
Still, you're an adult and as such you make your own decissions as you are the one who know best what she can cope with. Keep us posted, please.

PositivePeg · 01-12-2016, 04:32 AM

Agness, I'm so sorry your cancer has progress so far, so fast. You're in my prayers.
Thank you for being a strong advocate for the best treatment. I have a great deal to learn. The 20 questions for my oncologist is very helpful!
I had 3 weeks between my original mammo & the call-back mammo & ultrasound. (That was a mistake, but I knew many call-backs were unnecessary, never really thought I had cancer, so I didn't push for an earlier date or go to a different testing facility. I didn't have a gyn to consult b/c mine had retired a few months ago). I hate that I wasted 3 weeks! I tried to research, but was overwhelmed b/c I had no idea what I was looking for! I stayed off the internet for awhile & then focused on Christmas. I look back & think, 'what the heck was I doing with my time!'
I went to all of my appts with a new page of questions each time - I just didn't have the RIGHT questions! Each time, my husband & daughters & I felt confident with my team.
Thank you for putting up with me, I'm sure I caused some frustration!
Peg

MaineRottweilers · 01-12-2016, 07:04 AM

Peg,

I'm glad you are newly armed with information that might help you to make the best choices for you. Medicine is a practice, there are more ways to treat than just one and you need to do what is right for you. I was given a number of options at diagnosis, neoadjuvant therapy or mastectomy with adjuvant therapy. I wanted the cancer OUT. I insisted on that mastectomy right away. There was no way I was going to be satisfied waiting to see if chemo worked while those cancer cells were still free to travel. The only solution in my mind, the only thing that made me happy, was to see that tissue GONE. No matter what you choose for yourself, it is YOUR choice and there is no wrong choice because this is about you and your body.

jaykay · 01-12-2016, 09:02 AM

I totally agree with Tracy. I've been following this thread and the bottom line is that it is your decision regarding your course of treatment. There is no right or wrong. But you have received some excellent information that will help you through the course of your treatment.

I had surgery first, wasn't even offered neoadjuvant chemo and that was only 3+ years ago. This was my 2nd breast cancer and was very fast growing - a smaller tumor had already split off. I wanted both my breasts gone as soon as possible.

Best
Janis

sarah · 01-12-2016, 09:27 AM

Just a quick note, after surgery you may be too tired and weak to even watch tv or movies or hold a book or kindle so take an audio book or two and some soothing music. Fight to stay in hospital as long as you need don't let them kick you out too fast. They should come in and have you breathe into a tube to avoid pneumonia and put massaging pants on you to avoid thrombosis - these can be made cool.
Don't forget you will have a morphine drip on the left side of your bed that you can press for pain relief. it is limited in dosage so you can't overdo it.
take care, hugs and love
I know it's all a shock but it will get better and you are lucky to have a solid husband standing by you. I was lucky in that also.
sarah